Challenges

Life has always been a struggle for me. As a little girl, after laughing with friends while playing, I would get migraines that would not cease until I went to sleep. In third grade, my right ear was always itchy inside and paper thin dry mucous constantly covers the surrounding whole. It was so bizarre. In the back of my mind I knew something was wrong but I never mentioned it to anyone. I started kindergarten at four. At five years old I had to go to kindergarten again. When my mom told me I had to go to kindergarten again when I was six years old, I refused telling my Mom I already knew everything. So she enrolled me in first grade as a visitor but I was accelerated to second grade. I finished first grade with honors. I graduated in elementary with honors.

A few years after, another symptom came. I had this pain emanating from inside my right forearm like from inside the bone that came with weakness. The root of my thumb became swollen and it stayed permanently. I used to hit my arm because it was excruciating. It was an everyday ordeal. The headaches got worse. I would bang my head on the wall of my bedroom at times because of frustration. 

In high school, the headaches lightened up but I had eye pain. My Mom took me to an Optometrist who of course recommended that I wear glasses. The glasses never helped. I was doing great in all of my classes at that time except in Algebra. I have to admit that I was not too keen in Math so I always avoided it. As long as I can pass I was happy. This was senior year and I have been noticing that it has been taking me longer to study. It took me longer to understand and remember terms. To my frustration, I resorted to something really bad one day. Cheating. Yes, cheating,  although it never even crossed my mind before, I will do it because I felt like I couldn't recall what I studied. Just the thought of cheating was very scary to me. I had never done it before but I will do it because of 
desperation. So, before one of my exams I wrote some important terms in a magazine. To my stupidity, I used a very colorful AAA magazine and during the exams I used it as a writing pad. My 
favorite teacher who liked me a lot came to me and asked 
to borrow the magazine. I was caught and I haven't even used it! That was the beginning and the end of my cheating. Ever since then I wasn't her favorite student anymore. Albeit with difficulty, I managed to graduate high school with honors. Of course, it's not a big deal it's just high school but those will be my best years in terms of my memory.

Knowing my capability, I decided to take an easy preparatory course. I knew I could take any four year degree and proceed to Law School after. In my freshman year, I struggled with the classes where I had to memorize but I always had A's in practical classes. What didn't help were the unexplained debilitating headaches that occurred every day. But it wasn't so bad I passed all my classes. In my sophomore year, again it was a bit of a struggle. My headaches occurred every afternoon and never ceased until I went to bed. My 
eye pain was triggered by many things like face powder, eye liner, make up, mascara, hair spray or anything that I used when I wanted to look better. For example when I went to parties and wore eye 
makeup or hair spray I would end up being teased by our group because my eyes would be red. Each time after that I will have a debilitating headache.

Our family was planning to move to the US in 1982 and I was a sophomore in college at that time. And here comes my mom telling me that if I continue with my course she would not support me. She wanted me to study Dentistry. (In hindsight it's funny and I should've never done it) Because with a Law degree I can't use it when I moved to the US. She was right but don't we have a choice of what we wanted to be? Not in my family, especially us the 
younger ones. I've always been scared of my mom. I never even 
came to her with any of my problems. But I did what she wanted 
me to do. The next summer, I cross enrolled at a university where my friends go so  I can take some science classes for preparatory 
dentistry. Anatomy and Physiology for me is a very interesting class. I am very interested to learn about the human body's parts and functions. I studied very well. I was all prepared for the first 
exam,I thought. But while I was taking it I can't recall anything that I memorized. I couldn't write anything on my paper. I tried harder to  recall what I studied but my head hurts instead. I ended up guessing some of the questions. I failed that test instantly. I wasn't even aware I had degenerative cognitive issue at that time. I knew I studied very well and I was very prepared but I thought maybe I didn't do enough. So for the next exam I studied even better. I stayed up late every night studying. And fortunately 
the next exam was the same. I couldn't recall anything that I 
studied. I had a big problem. But I only wanted to keep it to myself. I was embarrassed or maybe too proud to admit it to anyone. Of 
course I will never be ready to tell my mom. 



I was lost. My professor who actually really liked me came to me and asked what was going on. I talked to him I told him that I was willing to make it better. But I cried my heart out when I got home that day realizing that things are not working. 

Next in class we dissected a cat and we will have  an exam on cat anatomy. Still I haven't given up I was confident that I could destroy that next exam. I used every minute I had to study, 
memorizing every part over and over and over until I was feeling nauseous. 

I came in early to class and was so ready for the exam. I told my professor to give me another chance and he was so willing to help me in fact I remember him being so fond of me. This time I studied 
very well. I came in very well prepared. Unfortunately when I sat for the exams and started reading the questions, I felt lost again, 
same as the previous exams. I couldn't recall anything that I ended 
up guessing. It was another fiasco. I had no other choice but to drop the classes I was taking at the university. 

I went back to my home school the next semester. Everything was fine in the beginning but the evil headaches came to haunt me everyday and my life was miserable. And then I started to have this 
pain in my lower abdomen. Everyday the pain would be there and it was very uncomfortable. It felt like something was going to fall. Later during the semester, the sore throats that I had every once in a while became like a weekly occurrence. I became very sickly that semester. Sometimes I would go home before or after lunch or after a couple of classes. 

When the semester ended, I went home to the province to just have a restful vacation like our friends and family did. When I came back to enroll for the next semester, I was informed by the Dean's office that I cannot enroll because I had three absences in one of my classes. That I cannot be accepted as a student there again. I was devastated at that time but at the same time I was so tired. 

In the back of my head I had a feeling there was something wrong with me but I was in denial. I had no idea what to do. I was scared but in no way I would have to tell my parents. There was just no way. So I just stayed in the dorm and just hung out the whole semester. In hindsight, I should have told them the truth. Although I couldn't have thought of it at that time because of how our mother was. She was a tyrant. No. No understanding.  I wish and I could have gotten help. It would have been the best thing. 

Thanksgiving

The purpose of Thanksgiving is to commemorate the good harvest of the Pilgrims in 1621, and to give thanks for our friends, family and good fortune. It is a very important occasion to celebrate by most households in the United States.

In our country, we do not celebrate Thanksgiving, but since we moved here in 1994, we have adopted it as our own. Every year, it became an important day for us. It's a day to be thankful for the blessings of the past year.

A year or two ago, Kevin has recorded what I had done in the kitchen thinking that it might be the last time I am able to prepare the feast. This year was very tough. The left part of my torso has become very stiff and hard that I cannot feel anything but pain. Taking a step with my left leg is excruciating, even more so with standing. But again, I was able to make dinner. Everything was good except the main dish! I never baked a small turkey before. I forgot that I was cooking a small one.

I baked a pumpkin pie meringue, corn bread and made stuffing using corn bread that I made adding with it leeks, green apples and sage. I made Mom's corn pudding. I made sweet potato casserole, green beans sauteed with shallots, cranberries with orange liqueur, sautéed mushrooms and made roasted garlic mashed potato. All made from scratch. Kevin bought a pumpkin pie hoping that I will not make a homemade pie, but didn't work.

Learning to adjust to make things more simple and not stress myself is what I need. Truly, it doesn't stress me mentally since I love to cook and bake but physically, it does! Now, I have to spend many days in bed again. It certainly made me happy that I served something I made in order to make others happy but it takes a toll on my body and it's not good for my condition. I need to care for myself even though it maybe a little late now.

At this point, I consider myself a walking quadriplegic. Everything is partially paralyzed including my stomach. It saddens me but I need to focus on the things that will help me later, I need to prepare for it. Wish I can scape it, but this condition is attacking me at will. I wish for it to halt but it seems like it just goes on and on. There are days when I want to disappear on the face of the earth. I feel like I have lost all my pride, my self esteem, they're long gone. I feel like I am going to loose him, too. The love of my life. I can feel it coming.

It is painful, so painful when you see your life falling into pieces. What will become of me when I am bedridden? I don't see any future, seems like nothing I can do to save myself.  For now, I'll just do what needed to be done, although inside me, I don't care as much for anything anymore. I love my son with all my heart but he shouldn't see me suffering, it will just hurt him.

How I wish I had a Dragon Naturally Speaking gadget that works!!! It's too painful to use my arms and fingers to do any typing but I just don't have any choice, oh yes I do have an option, the choice of not typing!!!!But I had been needing for someone to talk to and this is my way of letting it out.

I know that it won't be long and the days when I am up are over. Even I will not have the liberty to use a wheelchair and roam around. There is a reason why my wheelchair has a controller in the back! I wouldn't mind having a horizontal angle for a view of everything, say goodbye to the upright position. If you want to be positive, it's better than not seeing at all. Same thing as when you say nothing is worse than being bedridden and not being able to do anything? Others would say, no, be
positive, at least you're alive! I think I will get to that later.

A few years ago, I found happiness in gardening and cooking. Now Syringomyelia has taken them away from me almost completely. I heard it from others that SM really attacks its sufferers at will.I think I fought a good battle for many years. (It doesn't matter if it counts to others or not, I just know I tried my best)My son told me that if it wasn't for my persistence, I would have been paralyzed earlier, Kev doesn't agree. I believe it because there is regeneration in nerves, an example is a person that had a stroke can have paralysis and if they are persistent in trying to rehabilitate themselves they could walk again. My brother who is a doctor once told me that I should minimize the use of my energy, save , save and save. On the contrary, I heard my doctor say, in reference to me, "She's up and about, she will do better in the long run". Thinking back, I might have overdone, but like I said before, I wanted to have a life. So if I may have shortened my walking years because I wanted to do things that I can still do at that time, then so be it.

In the book of Matthew, Chapter 6:25. It talks about God telling us not to worry about everyday life. I believe, but I still worry, I worry about so many things especially with what I am going through right now. Besides my condition being a big burden in my mind, I was bothered by some article in the newspaper that my partner had wanted me to read. It may be that he wanted to help, thanks to him but it's almost funny when people say this things because they have no clue what each and everyone of us go through. The article is entitled, Training the brain to Ignore Pain, not knowing that when you have a chronic pain it's totally different from someone who has pain or does get sick every now and then who can afford to lie down and take care of their pain when they do because it only happens once in a while. Not to someone who is in pain everyday for years!!! You become an expert at ignoring your pain. I worked for many years even though I had excruciating pain. Now when it's time to make dinner and my pain hasn't subsided, I can make a quick dinner even when I'm in a lot of pain,it's even hard to think what's the next thing to do because your pain is all over your body and not just one particular area. You learn to smile even you have stabbing, tugging, sharp or electric like pain that makes you nauseated. Life has to go on. But when you talk about your pain, to some people, you are just this weak individual that cannot put mind over matter!!!!lol I just laugh at it. They just don't realize that maybe I/we should teach people how to learn to live ignoring our pain!

Sometimes it's nice to be alone because you don't have to pretend there's nothing wrong when your bladder feels like it's being pulled out of it's place, you just want to tie it with a string and hold it up 24/7 or tie it around your neck, when your legs and feet feels very cold like they're covered in ice but burning or I simply call it the acid burning feeling that makes your hair all over stand up and as if someone is trying to skin your legs and pouring acid on your flesh at the same time, when your shoulder and upper back feels like you're being stabbed in every inch at the same time pulling,tugging and drilling inside so deep and someone pushing you down and you have to fight to remain upright, when your lower back and buttocks feels like it is broken in small pieces and burning inside so deep, sharp pain inside like an electric drill stabbing and crushing you all over, when you're trying to walk even though your pain is up a notch over a 12, feels like your body is a long piece of steel but someone is trying to bend it. The only way to relieve it is to be in bed. I could go on and on and describe the pain that goes on all over my body but it's not going to change anything.

I think I'm in an emotionally vulnerable position right now. Things will change. Someday it will be easier for me to be thankful for the last seven years that were given to me that I surely enjoyed. I will not try to change anything. It was a different life but I tried to embrace it. I thank God and my doctors for those years. The past seven years were the best gift of my life.

It's Been Difficult

Since June of this year, it has been so difficult. It seems like my condition has been spiraling down everyday. The only times that I feel better is after a doze of Dilaudid. Now doctor's advice is to limit or stop taking it. I totally understand. I avoid taking it myself.

The left side of trunk had been extremely stiff. It is obvious there is no signal coming from the brain, not getting through the spinal cord. I had gone through P.T. but to no avail. I have been using a back mas sager which helps for a very short time and then goes back to being very stiff and hard after I sit,stand or walk. I am really losing hope. I don't have happiness anymore. Before, there were things I am thankful about. There were things I can do. Some people say, it could be worse. What is worse than being alive and not be able to do anything? Being dead, right. I'm sure that this feeling will get better. There has been a change in my condition, it is worse, but when total paralysis sets in and you know that there is nothing that can be done and you've used up all your resources, ACCEPTANCE will set in.

Sometimes I wish that we have the right to end our suffering. I don't think I have any patience left. I know this feeling is temporary. I feel so down, so sad but you almost have to keep it to yourself. I cry mostly when I'm alone. No matter how I try, it's hard not to cry and be sad about it. I try to be courageous about it and be tough like my Dad, but I just can't. Yes, I tell my partner my pain, I never tell anything to my son who was in Iraq and now in Ft. Hood. The only person that I cry to is my Mom although she's not always a good listener, it's alright as long as I can vent. It helps to be able to vent although it seems like a torture to someone on the receiving end.

Things maybe difficult now, but when I get settled in my wheelchair permanently, I know things will change.

Severe Arm Pain, Severe Headache, Scary Feeling

It's been a while since I posted last, avoiding typing as usual bec. of severe arm pain.
I'm in Daly City to come see my Dad who's been asking when am I going to visit. I was going to take the bus but too much stress involved if I did. So I decided to ask my nephew to come pick me up. Again, never in my life did it cross my mind that I would be asking for rides in my 40's!! Driving is the biggest loss for me. I'm hoping that after surgery, I could drive.
I'm scheduled for an anterior cervical discectomy and fusion on Sept. 15, 2011 at The Chiari Institute in Long Island, New York. I'm really hoping that it will change my life to somewhat brighter and a little more fun than what it is now.
Right now everything I do using my hands and arms hurt so much, like my arms are separated from my body. The headaches are weird, feels like it is my brain that hurts, only on the left side. Pressure in the ear is annoying like drilling inside my ear. The pain around the root of my arms, shoulders, upper back, chest area makes me feel nauseated. The left side of my back gets more and more numb and hard and it feels like it has been getting higher almost to my shoulders and it feels really weird. It gets harder to walk each time I try. I still haven't been able to sit. Not sure if the surgery will do anything for this. Not to be negative but I know this is coming from my spinal cord and not from stenosis or kyphosis or whatsoever. But I guess we have to be optimistic and just hope that the surgery will help!
The last two months have been kind of miserable, spending more time in bed almost everyday. After breakfast it's back to bed time, after lunch it's back to bed time. Then if Dora doesn't make the dinner, I make easy dinner for us, scoot with the dog and then bedtime. I want to do a little more than that. I have been hiding from friends who have been inviting me to go out with them. It's hard to explain to them what I can't do because I look so normal.
Until next post, my eyes are dry and tired. I will sleep good tonight for sure.

Trying So Hard To Be Positive

My condition has been going downhill day by day although I have been trying so hard to stay positive. I never mentioned anything to my son about my worsening condition. He has many other things to worry about and the last thing I would want is to add to his burden.
I try to make easy meals and healthy at the same time. I like to broil fish and vegetables. For breakfast, I usually eat banana and yogurt. Sometimes I ask Dora to cook enchilada and I eat it for many days!
I haven't posted for a while just because of the weakness of my extremities. I was taken to the ER last Wednesday because of weakness and numbness on the left side of my body. It is a very scary feeling when you feel your body becoming hard and weak, I thought I was going to be paralyzed!! My left side has been bothering me even more, it's weird because it used to be the right side that was weaker. It's disappointing that other people judge you. The doctor asked me to push and I couldn't push hard and she said, I know you can!! This disease could give you pain not only in the body but a heartache because it is an invisible disease that people tend to think you are exaggerating.

Right now, when I use my arms as for anything, right away it's hard to breath, I feel weaknesss in my chest area and the pain is excruciating. It feels like breathing from a very small sieve!!All my joints, including knuckles of my fingers are painful. Ankles, knees, root of my arms, elbows and wrists are all very painful and arms and legs are very weak. The weakness comes from inside. Right now, it is hard to stand up for a few minutes, my body seems like it is broken in the waist and buttocks area and my arms feel like they are going to fall off.

I am getting so close to being able to accept all of these but one thing that is going to be very difficult is to become bedridden, I wish to be able to get into a wheelchair. With the symptoms I'm having, it is very difficult even at this time to be in a wheelchair. After a while, my body needs to be back to bed! After walking a 
few minutes, I'm already tired, the same thing with using my arms!!
I heard from my Neurosurgeon on August 1st. It made me very happy and more hopeful again. He wants me to have a cervical MRI and an EMG of the upper extremities and then depending on the result, I would have to go and see him in New york.
I immediately asked for an appointment to see a local Neurosurgeon, unfortunately, I was scheduled on Sept. 1 so I will have to check in everyday for cancellations.
Hoping for the best.

Early Signs of Paralysis

My left mid back continues to get stiff and thick besides continued Physical Therapy. The pain is aggravated by walking, sitting and even when I'm reclined. Anywhere where it has to support my body.

The pain includes the muscles in my stomach. My legs continue to get numb and the root of my arms are still the same. They become very painful when I use my arms esp with activities that involves lifting them up or to hold something. For that reason I haven't been able to read a book for a very long time now. It doesn't help that my neck has all kinds of problems like spondylosis and stenosis. I can't look up or down without getting hurt so much. The only way I could read a book or watch television without getting hurt is by watching or reading from the ceiling which I don't have. (wait a minute, no I can't lie on my back too long, either ). With a computer, I had to buy a laptop because it's impossible for me to use my desk top. I have to flip the laptop to it's side, lie down on my right so I can use the keyboard without having to look up and down. But still, my computer usage is also limited because of my eyes and my hands. They all get tired pretty quick. Then I pay for it the next day.

Today I have to stay home while the rest of the family went to LA to attend my niece's Kristine's UC Irvine graduation and Kev has to go to Santa Cruz for his niece's graduation. I really have to stay in bed because of my back being sooo stiff, it's like a rock!! I couldn't think of the most frustrating thing than to be in bed when you are a person who wants to do so many things.

 You realize after complaining and whining that it's almost always easier to come to an acceptance to make it easier for you. I called my dog Frodo to join me, have some snacks (in bed!) and life is good again.

Embrace Fear and Let Go

Today I ask God to heal me once again, touch me and I will be healed and I'm going to wait for that day if it's not today. A few believers say, you have to believe that you have been healed and you will. But what if you've done all that and you're still in pain? And every single thing you do, you suffer from pain like most Syringomyelia sufferers?

Unbelievable as it may seem, but I'm in it!! As far as I can remember I have had many challenges because of Chiari and Syringomyelia. Today is one of those days where my body feels like it's been forcibly separated into two pieces, upper body and lower body with a buttocks that's been broken in many pieces!! You're constantly holding your stomach muscles up as to keep your bladder up or it will drop on the ground. Your legs feels like their nerves are too short and they're being stretched to cover the whole area and they're getting numb because of that. The feet constantly feel ice cold in the cold season like acid was poured over them and during the warm season they feel constantly swollen with heat.

As I often say, there are a lot of things I want to do besides things I should be doing but it has been many years that whatever I do I would be in pain for days, weeks, months or even years. Depending on what I did. Wish I could write on my blog everyday but it's impossible because today I am typing and for sure it will hurt my hands and arms again like it always does.

There used to be this fear, fear inside of me that is almost blinding. I felt panicked or worried. To a point where I may have been bitter because I was afraid of change, afraid to leave my son to fend for himself. Fear of leaving the life that we may have known. But as years passed, with my health still deteriorating, I began to dissolve the power of fear by embracing it and by embracing it, I had learned to let go. That impenetrable barrier of fear no longer exists. In it's place is the change that my heart has been longing for, unfortunately not by choice but being able to face the reality of how you are going to live without any spice in life. The only reason why you're alive is because you're still breathing. You have no choice.

Let Me Think!!!!

This pain won't allow me to think at all!!!! This is torture, I pray to God to help me be a good Christian and someday be saved and go to heaven where there is no pain and suffering!!!

At times, I feel like I don't have anymore patience to live with this pain but I have no choice, I'm still alive, you lose more being negative so be positive!!!

Last Saturday, Kev and I left for Santa Cruz at 9:15 AM, stopped by Shopper's Corner, a gourmet grocery close to Kev's Mom's place. Then went to his Mom's. I sat for a little and decided to help after a few minutes. Kev moved the tan bark from the front yard into the backyard using the recycle bin and I helped his Mom rake it to move it around and then Kev and I stapled the plastic liner. After we were done in the backyard, Kev mowed her front lawn and his sister started weeding and I helped weed a little and swept a little, I wasn't feeling good anymore but was quiet about it. We finished the work in about 3 hours. Betty, Kev's Mom was very happy.

Kev and I stopped by to have lunch at Camino Real Mexican Restaurant, an old authentic Mexican Restaurant in Watsonville for a late lunch or early dinner. He had Bistek Ranchero and I had Chicken Enchilada. It was so good as always!!

We went to our hotel and took a shower and rested. We were scheduled to meet with his Mom and sister for dinner at 7:45 PM but cancellled because I was throwing up and too sick to go. I was in horrible pain. We just watched a documentary and went to bed. Kev was asleep before I knew.

The next day, Kev left early to the mountains to ride his bike. I woke up late, Frodo woke me up. We went for a long walk. Frodo was so excited to go for a walk there. He's always excited to do anything there but not in Sacramento.

Kev came back around 10 and while he was showering, I kept getting this call which I always thought was a sales call. I didn't answer it and next thing my computer started to ring. It was my son calling me on Skype, he told me he's been calling my phone. We taked for almost 30 minutes. It was about 9PM there when we were talking and Sgt. Cam came to Russ' room to ask for help. Which means he can be called to work anytime, he hardly sleeps. I felt bad, between my pain and missing my son and his situation there, I could just cry and cry and cry and I did!!

We went to check surf spots, stopped by his Mom's and went to Walnut Blvd Cafe in downtown for late breakfast. He had Huevos Rancheros and I had avocado, mushroom and cheese scramble and a fruit bowl. We went around downtown. I bought cards for friends, looked for humorous cards but not humorous enough for my son. We went back to the car but I asked Kev if I can buy a couple of things at Trader Joe's, so I did. We left for Sacramento and we got home around 6:30 PM.

I knew it was going to be tough to cook, but I couldn't find anything easy to make. I made past using the Pampano fish that I thawed out and used the broccollini that I purchased at Trader Joe's. I was very tired. I knew I snored that night.

Another Challenge is Back

The last three days had been very difficult, in addition to the stomach problems, my shoulder and chest area, including the root of my arm had been excruciatingly painful, neuropathic pain is a living hell. I had been crying everyday, most of the day. I know that the pain comes from me using my arms, it's all the muscles engaged in using my arms.
I can't help but worry about things I can't do that needs to done at home. Yes, thankful everyday that I get help but with the worsening of my arms, there's more ad more things that needed to be done and Dora doesn't have all the time to do it for me. Simple tasks like my mail, my bills, application forms that needed to be filled out. I can't use my hands to write anymore. I'm hoping that it will heal again and not continue to degenerate.
Making love to Kevin is almost impossible. I can lie down and not participate!loll Poor guy. It's hard to use my arms and my legs.
I wonder how I will type in my computer when the time comes that I can't move my fingers anymore. About taking care of myself? It seems that everyday it gets closer and closer. I guess if others can, why can't I? haha. I guess with every situation we tend to adapt. It's human instinct. We can work it out, is what the Beatles say.

Gatroparesis

Lately has been more difficult because of my stomach. What scares me is that it started with symptoms I had 14 years ago only it is more severe in a way that anything I eat my stomach gets in so much trouble, it's constant as compared before it was about maybe twice a week, maybe three the most.
It is hard to eat, I think of what to eat and when it's there and I start eating, I feel like throwing up. I don't have an appetite. I force myself to eat because I need it in order to take my meds.
I cut down again on Neurontin from 2400 to 1800 today. It maybe abrupt but I have to consider the condition of my stomach, I feel like I have thousands of cuts inside of it. It is paaaaiiinnnffullll!!!! I'm scared!!! I can't stand straight, I have to crunch my stomach because of the pain and there is pain in my back on the left side which I have no idea why.
For many years, I fought hard from not being able to walk in 2002 to walking about a couple of miles or a mile about three times a week but it makes me sad that lately, I have been spending more time being in bed. Being in the computer is a challenge because of my neck hands and arms including my eyes. Even sorting out my mail has become challenging. I try to walk my dog everyday even for a few meters, but today was very difficult because of the pain in my buttocks (has been a long problem causing ataxia)which I had fought for long. I cannot wait to get my new wheelchair. I got my powerchair in August of 2009 but this past month I went for a wheelchair evaluation because I will be given a different one to accomodate the decline in my condition. I can only sit for a few minutes, so I need a wheelchair that can recline more and with leg adjustment.
I am hoping that my condition will stop declining or even get better. It is not easy being in bed most of the time. It's spring and soon when the sun comes out I'm hoping that I'd be able to have a vegetable garden and an herb garden to pick herbs during days that I can cook!

Looking for More Patience

Yes, I'm looking for more patience, asking God for more patience. I know I can say it could be worse but to have such debilitating condition could really get into you but I just need more patience. Yes, I'm aware that there are people out there with much worse condition than I'm in and I realize that the more you complain and feel tired of it the harder it gets. I have to learn to take it easy, do what I can and things will be alright. If my body says don't go anywhere, I'll try not to go anywhere unless there is anything pressing like doctor's appointments. I try not to go to PT because it's very difficult to ride but my neurosurgeon in New York who is my no. 1 doctor recommends more PT, so I guess there's not much choice. For sure it will be better for me in the long run.
I would like to record my condition as of this point, this is not to complain just but to record my pain. I am tapering down on my Neurontin from 3600, I'm now down to 2400 Neurontin, 60 Ultram and 60 Cymbalta with 2mg Dilaudid as needed.
So as expected, my body is going through withdrawal, every inch is so painful and I have been getting swelling as well. Joints, upper back, shoulders, neck swelling and pain, including my breasts, very tender to the touch. When my arms are raised they're very painful. My feet are burning with acid!!! Don't know what to do with them. Joints are painful. At the present, it's very hard to get comfortable. When laying on my sides my arms easily get numb and when lying on my back, my buttocks get numb and the makes it a lot harder to walk. Also it's hard to breath when lying flat. There is no sitting at this point, I cannot bend my torso or my stomach, I mean I can for a few minutes and then after a few minutes, my stomach swells and the pain is aggravated and then I have to lie flat for the rest of the day and be in pain.
With eating, I don't have an appetite but I have to eat in order to take my medicine. Unlike before, I can have a banana and a yogurt and I can take my meds but not anymore. I have to have a meal to have less pain. Not that I won't have pain and swelling but somewhat less. It has been so difficult lately, Gastroparesis is getting harder and harder to manage. But like I said, I need to have more patience, it's a basic key in order to deal with this type of pain, constant nagging pain.
I'll keep asking for it. Ask the fairy to put some in my pocket.

Just came back from the Spine Clinic and saw Dr. Meuselar. Did a full neurulogical exams and he told me I need surgery, he might insert a tubing into the spinal cord but he would like to confirm that after I get a cervical MRI.

I could feel that it's coming so close,paralysis I mean. Everything is difficult to do. It's not visible but I am losing tolerance to all this pain. I want to give up moving, because mobility is getting more and more limited and the pain with every movement is excruciating especailly in the stomach and mid back area. My torso cannot support my body and my neck cannot support my head?? I'm so tired of being in pain!!!!

A month vacation in North Shore of Oahu at Christmas Time

The familiarity of life in the North Shore of Oahu for Kevin and I started on Dec. 4, 2010, we arrived at about 1p.m. Hawaii time. We met one of the few remaining World War II veterans who flew with us in the same plane, who came for the anniversary of Pearl Harbor. A man in his late 80's in such great shape with such confidence, talked to us about what he did during the war. From the airport we rented a car and immediately drove to our rented place in North Shore. In order to get to it, is a stairs on the side of the house. From the balcony is a sliding door that takes you to the studio, stepping inside takes you to living room area with sofa and chairs that is sort of old but very comforable. There is a television that can be turned to face the bedroom area behind the sofa. On one corner nook is a small dining table, next to the kitchen and then the bathroom. The place was gorgeous, it was a nice beach house but not that neat for the two neat freaks of us!! So we cleaned as soon as we got there. Kevin was happy when it was done, he readily went to surf. The smile on his face was the smile of a little boy so content, all tension of corporate job gone, he walked past the downstairs balcony and I can see the sand beneath his feet, he was carrying his surfboard in one hand. That was the happiest I have seen him over the years. I watched him from the balcony and my eyes followed him as the coolness of the breeze coming from the ocean touched my skin giving me an instant relief and feeling of relaxation.
There, I enjoyed cooking while I watched the surfers at Rocky Point.